Hi Lynne,
I'm fairly new on the list, but I am a PWP, 48/37/35,and I go to Phila.
for my neurology visits. I have been on Permax for at least 10 1/2 yrs. &
it has never been a problem for me. I was advised to take it along with my
Sinemet 25/100. They started me on .25 (I think - long time ago) and then
increased it to .50 and then l mg.
I have been taking 6 or 7 a day every three hours WITH my Sinemet. I had
DBS a year ago which has taken away tons of pain from dystonia & if I don't
get stressed out now my "on" time has really improved. I tried different
drugs and less of them after my surgery, but what I was taking before
surgery is working well. I have been feeling much, much better emotionally
and physically because of my New Year's resolution (to lose weight). I eat
fish or chicken every day, lots of water, veggies, & fruit - try not to eat
snacks at all.
I tried Mirapex, but I couldn't see any difference. The Permax works
well (so if it ain't broken, don't fix it). I have never had any type of
hallucinations with any of my drugs. I might add that Permax is the most
expensive. Thank the Lord for insurance.....about $ 4.50 per pill......in
PA (USA)
Good luck.
Paula
----- Original Message -----
From: "Lynne" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, February 01, 2002 2:07 PM
Subject: Help About Agonists?
> Hello,
>
> I'm trying to learn about agonists for my mother, Virginia. I'd
> appreciate any advice about whether any particular agonist might help
> her. In the last couple months, she's had more discomfort between doses.
> She is 81 years old, diagnosed with PD about 17 years ago. She also has
> peripheral neuropathy, and from this she has been been bedridden for two
> years. She doesn't see a neurologist regularly because getting anywhere
> is harrowing. We did have a phone consultation with a PD specialist last
> year, but the experience was not helpful. (And I got an impression that
> the neuro was not as knowledgeable as people on this list. I've
> subscribed here off and on for some time).
>
> For what it's worth, two years ago my mother had in-person evaluations and
> batteries of tests with another neurologist and other physicians with the
> outcome that she was overloaded with Sinemet to the point of being "out of
> it" and in great physical discomfort for several months. The neurologist
> in charge then had no clue.
>
> Relief came only after I posted information about her and asked some
> questions on this list, where people explained that she was probably
> getting too much Sinemet. Anyway, we reduced the Sinemet strength and
> reworked her schedule based on observation plus information from this
> list. Once the new Sinemet dosage and schedule was established, her
> comfort improved tremendously and her mind cleared. (She still has mild
> hallucinations but she knows are not real, but of course they are
> annoying. A low dose of Zyprexa at midnight has stopped nightmares, and
> adding a low dose during the day is under consideration to reduce day time
> hallucinations.)
>
> I would be grateful for any pointers and advice about the use of agonists.
>
> In the last couple months, she's been feeling more physical discomfort
> between doses. This includes painful muscle contractions, extreme
> slowness of movement, and high anxiety. (By the way, she does not have
> involuntary movements.) She says she is stiff, "but that doesn't bother
> me as much as the other stuff." She does not eat for 60 minutes before
> Sinemet and for 30 minutes after. Her schedule is:
>
> 7:00 AM One Sinemet CR 25/100 plus one-half Sinemet 25/100.
> 7:30 AM One Dilantin 100 mg.
> 10:00 AM One Sinemet CR 25/100.
> 1:00 PM One Sinemet CR 25/100.
> 4:00 PM One Sinemet CR 25/100 plus one-half Sinemet 25/100.
> 5:00 PM One Nortriptyline 10 mg (anti-depressant. Soon to go to 25 mg).
> 7:00 PM One Sinemet CR 25/100.
> 10:00 PM One Sinemet CR 25/100.
> 12:00 AM One Zyprexa 2.5 mg (prevents nightmares)
> 12:30 AM One Sinemet CR 25/100.
>
> Many thanks.
>
> Lynne
>
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